A woman given 12 months to live by doctors in Yorkshire when she was diagnosed with aggressive brain tumours has issued a plea to NHS bosses to think again after they refused to pay for a drug which is successfully prolonging her life.
Lisa Brydon has already paid £21,000 since July for the drug Avastin but she and her husband are rapidly running out of cash and are warning they face selling their house to fund it.
Avastin has been previously given to several dozen brain tumour patients in Yorkshire by the Government’s Cancer Drugs Fund but funding was axed following the NHS re-organisation last year.
An application from her specialist has three times been rejected, with a final appeal now pending despite scans showing the drug has shrunk her tumours and significantly reduced her dependence on steroids - both improving her condition and saving the NHS money.
The 43-year-old said: “I feel aggrieved that I’ve paid for my own mini-trial to see if this drug will work. I’ve shown it has worked and is working and nobody is listening to us.
“The NHS is still funding non-emergency treatment such as cosmetic surgery, compared with my case and others which are life and death situations - it seems unfair.”
Her husband Jack Carter, 66, who she married last year shortly after her diagnosis, said they had funded the drug from savings but they faced selling their house in Little Smeaton, near Pontefract, where they had lived for 14 years, to continue to pay for it.
“We just want a bit of help really. We are doing our best. The evidence shows it is working and we would like the funding people to look at it favourably,” he said.
“Lisa’s future is dependent on the drug.
“This is an exceptional case as we have seen a dramatic improvement as endorsed by her consultant. The infusions are costing £2,900 per cycle so the financial implications are massive.”
Ms Brydon was fit and healthy, taking part in a series of triathlons in the UK and abroad, but began complaining of severe headaches before she collapsed in July last year.
Within days she underwent surgery when the full extent of her condition became clear and specialists gave her the grim news her prognosis was only around 12 months.
She has been given chemotherapy and radiation treatment but in the spring tests showing the cancer was progressing and her consultant Prof Susan Short, of St James’s Hospital in Leeds, recommended she try Avastin.
The couple describe her treatment as “fantastic”, with NHS staff trying “very very hard on our behalf” and they hope to continue using the drug for as long as it is effective.
In a submission to the Cancer Drugs Fund, Prof Short said Ms Brydon had had a “very good clinical response”, with a “likely survival benefit” from continued treatment.
Specialists in Leeds say the median survival for patients previously given the drug and responding to it is around 18 months.
Selby and Ainsty MP Nigel Adams has written to health chiefs calling on them to think again.
“This is a very sad case and I can imagine why Ms Brydon feels frustrated especially have spent so much of her own money on the drug,” he said.
“The Cancer Drugs Fund introduced by this government is an excellent initiative and in my view she should benefit from it.”
Kate Kershaw, head of support and information for The Brain Tumour Charity, said: “This is a heart-breaking situation which underlines the urgent need for more research into brain tumour treatments.
“It is not acceptable that patients like Lisa feel compelled to pay for a drug because nothing is available on the NHS that is scientifically proven to be effective.
“We would like to see more clinical trials into brain tumour treatments, and particularly more testing of drugs on brain tumours which are already used to treat other medical conditions - and are therefore known to be safe for patients.”
Around 55,000 patients have been given drugs from the Cancer Drugs Fund since it was set up in 2010 at a cost of £750 million - about £13,600 each.
But controversial changes are expected to be agreed next month, with some drugs no longer being provided as bosses at NHS England struggle to bring its spiralling budget under control. Drugs of less benefit and those which are more effective but very costly are likely to be axed.
NHS England, which operates the fund, said: “While we are unable to comment on individual cases, we do understand the difficulties patients living with life-changing diseases and their families go through when making decisions about their treatment.
“We have to make very difficult decisions about which cancer drugs to fund and this means carefully scrutinising all available evidence on their effectiveness.”